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Introdução: a doença de Andrade é uma doença rara, neurodegenerativa e hereditária, cujos sintomas, normalmente, surgem na segunda metade da segunda década de vida. O transplante de fígado e, mais recentemente, o Tafamidis permitiram que o curso natural da doença se altere, aumentando a esperança e a qualidade de vida da pessoa afetada pela mutação. Objetivos: descrever o modo como as pessoas vivenciam a incerteza da transição saúde/doença provocada pela doença neurodegenerativa hereditária; descrever a relação entre as representações sociais da doença, as crenças culturais e de saúde, a experiência prévia com a doença hereditária, e a mudança na abordagem terapêutica; determinar a sua influência nas vivências da PAF na perspetiva da pessoa portadora da mutação. Métodos: estudo de abordagem qualitativa, interpretativa e etnográfica. Realizado na comunidade da Póvoa de Varzim e de Vila do Conde. Participaram 31 pessoas com PAF, 8 testemunhas privilegiadas, 106 residentes nos dois concelhos e foram analisados os jornais da Associação Portuguesa de Paramiloidose. Realizada análise documental, análise de representações sociais com apoio do software IRAMUTEQ e da análise de dados qualitativos recolhidos através de entrevista e dos procedimentos de análise de Milles, Huberman e Saldaña (2014). Resultados: apesar dos avanços terapêuticos, a PAF ainda é entendida, pelos participantes, como uma doença grave e causadora de grande sofrimento. O seu carácter hereditário afeta o portador e a família, sendo considerada um factor distintivo na comunidade e percecionado como um estigma pelas pessoas com PAF. A incerteza da transição para a condição de portador da mutação é mediada pelas condições pessoais, pelas condições da comunidade e pelas condições da sociedade. Da análise dos dados recolhidos foram identificados cinco focos da atenção dos enfermeiros que devem ser valorizados na prática clínica. Conclusão: as pessoas que vivem com PAF na comunidade de Vila do Conde e da Póvoa de Varzim apresentam necessidades de cuidados de enfermagem que ainda não têm resposta nessa comunidade. Este estudo torna evidente a necessidade de conceção e validação de um modelo de acompanhamento das pessoas e das famílias que vivem com a doença de Andrade.
Introduction: Andrade's disease is a rare, hereditary, neurodegenerative disease whose symptoms usually arise in the second half of the second decade of life. Liver transplantation and, more recently, Tafamidis have allowed the natural course of the disease to change, increasing the hope and quality of life of the person affected by the mutation. Objectives: to describe how people experience the uncertainty of the health/illness transition caused by hereditary neurodegenerative disease; to describe the relation between the social representations of the disease, the cultural and health beliefs, the previous experience with the hereditary disease, and the change in the therapeutic approach; to determine its influence in the experiences of the FAP in the perspective of the person carrying the mutation. Methods: study with a qualitative, interpretative and ethnographic approach. Made in the community of Póvoa de Varzim and Vila do Conde. The participants where 31 people with PAF 8 privileged witnesses, 106 residents in the two municipalities, and the newspapers of the Portuguese Association of Paramyloidosis were analyzed. Documentary analysis, analysis of social representations with the support of IRAMUTEQ software and the analysis of qualitative data collected through interviews and the analysis procedures of Milles, Huberman and Saldaña (2014) were carried out. Results: despite the therapeutic advances, FAP is still understood, by the participants, as a serious illness causing great suffering. Its hereditary character affects the carrier and the family, being considered a distinctive factor in the community and perceived as a stigma by people with FAP. The uncertainty of the transition to the condition of the mutation carrier is mediated by personal conditions, community conditions, and societal conditions. From the analysis of the collected data were identified 5 focuses of the nursing attention that should be valued in clinical practice. Conclusion: the people living with FAP in the community of Vila do Conde and Póvoa de Varzim present nursing care needs that have not yet responded in this community. This study makes evident the need to design and validate a model for monitoring the people and families living with Andrade's disease.
Introduction: Andrade's disease is a rare, hereditary, neurodegenerative disease whose symptoms usually arise in the second half of the second decade of life. Liver transplantation and, more recently, Tafamidis have allowed the natural course of the disease to change, increasing the hope and quality of life of the person affected by the mutation. Objectives: to describe how people experience the uncertainty of the health/illness transition caused by hereditary neurodegenerative disease; to describe the relation between the social representations of the disease, the cultural and health beliefs, the previous experience with the hereditary disease, and the change in the therapeutic approach; to determine its influence in the experiences of the FAP in the perspective of the person carrying the mutation. Methods: study with a qualitative, interpretative and ethnographic approach. Made in the community of Póvoa de Varzim and Vila do Conde. The participants where 31 people with PAF 8 privileged witnesses, 106 residents in the two municipalities, and the newspapers of the Portuguese Association of Paramyloidosis were analyzed. Documentary analysis, analysis of social representations with the support of IRAMUTEQ software and the analysis of qualitative data collected through interviews and the analysis procedures of Milles, Huberman and Saldaña (2014) were carried out. Results: despite the therapeutic advances, FAP is still understood, by the participants, as a serious illness causing great suffering. Its hereditary character affects the carrier and the family, being considered a distinctive factor in the community and perceived as a stigma by people with FAP. The uncertainty of the transition to the condition of the mutation carrier is mediated by personal conditions, community conditions, and societal conditions. From the analysis of the collected data were identified 5 focuses of the nursing attention that should be valued in clinical practice. Conclusion: the people living with FAP in the community of Vila do Conde and Póvoa de Varzim present nursing care needs that have not yet responded in this community. This study makes evident the need to design and validate a model for monitoring the people and families living with Andrade's disease.
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Keywords
Polineuropatia amiloidótica familiar Enfermagem Incerteza Transição Familial amyloid polyneuropathy Nursing Uncertainty Transition